OH NO! CANADA ALSO INVOLVED IN HUMAN EXPERIMENTATION

Ian Mosby, a post-doctoral researcher in the history of science at the University of Guelph, was investigating Canada’s nutrition policies during the Second World War when he saw a paper by a federal scientist comparing Aboriginal children with white children. Scientific curiosity had Mosby wondering where this data had come from, but tracking it down did more than just sate his interest.

Mosby’s digging led him to one of the biggest stories ever told of biomedical research in the North, a story of experiments on Aboriginals in the 1940s and 50s that ranks among the most unethical research projects in Canadian history.In the wake of Mosby’s exposé, I wrote about the need for an investigation into these experiments, but that wasn’t the end of my interest in this dark era. I wanted to know about Mosby’s process, the behind the scenes story of how one historian’s digging unveiled what otherwise likely would have remained hidden.

Through interviews with Mosby and others, I learned how light was shone into dark corners, and how difficult it is to pull information out of the shadows.Mosby’s research sent him down a few blind alleys as he searched, unsuccessfully, for the private papers of prominent scientists involved in the experiments on Aboriginal children.

At Library and Archives Canada in Ottawa, he requested publicly accessible files from the federal government’s Nutrition Division, but the results were hit and miss.“I’d order a lot of files which would say ‘Health-Residential Schools’ and I’d get the file and it would just be empty,” Mosby told me in an interview in August. When actual documents did arrive, he said, “you can just go through boxes and boxes. Most of them are useless, and hopefully, you find something.”

Working around changing rules for when it was permissible to use a camera at the budget-slashed, short-staffed Archives, Mosby photographed any documents that looked marginally relevant. Returning home, it would take him about a week to read the material he shot in one day.

Supplementing the archival material with research papers he’d pulled from digitized materials at university libraries, Mosby eventually put enough together to write an academic exposé on the experiments that were carried out on Aboriginal adults who lived on reserves in Northern Manitoba, and children at six residential schools across the country, from the 1940s through to the early 1950s.In the early 1940s, scientists working with the federal government first documented malnourishment on the reserves, where some people were getting by on an average diet that provided just 1470 calories—a caloric content similar to the diet used to induce starvation in the famous Minnesota Starvation Experiment of 1944-1945.Based on that figure, Mosby determined that what would have been needed was “emergency food relief.” But that’s not what happened. Instead, the federal researchers divided the adults on the reserves into two groups.

They provided vitamin supplements of thiamine, ascorbic acid, and riboflavin to one, while the other served as a control, with both groups undergoing medical exams including photos of their eyes, gums, and tongues.

Nutrition was a relatively young field in the 1940s and scientists were theorizing about the general effects of supplementing a diet with vitamins and minerals. Mosby thought that what drove the experiment on the reserves was “the nutrition experts’ desire to test their theories on a ready-made ‘laboratory’ populated with already malnourished human ‘experimental subjects.”

A few years later, the tests at the residential schools began. At a residential school on Vancouver Island researchers kept Aboriginal children on less than half the amount of milk recommended for children in the rest of Canada. They did this for two years, to establish a ‘baseline.’ For the next three years, they added extra milk, to see what tripling the kids’ intake would do.

In Shubenacadie, Nova Scotia, the scientists used students to test the utility of ascorbic acid, or Vitamin C, to prevent gum disease. Since dental care could have affected the results, the team stopped Indian Health Services dentists from visiting the study schools.In an interview with Ottawa journalist David Napier in 2000, Lionel Pett, the biochemist and medical doctor who supervised the research in the schools, defended his work. Pett said that withholding dental care “was not a deliberate attempt to leave children to develop [cavities] except for a limited time or place or purpose, and only then to study the effects of Vitamin C or fluoride.His argument would not be persuasive today. “It’s very easy to say that this could never happen now,” said Susan Zimmerman, executive director of the federal Secretariat on Responsible Conduct of Research, in an interview. “Scientific goals and ethics are not always one and the same; you have to sometimes adapt your scientific goals.”Zimmerman recently led the development of the second edition of the Tri-Council Policy Statement (TCPS), the rules that now guide research on people in Canada. In the guide, one chapter is specifically devoted to rules for research with Aboriginal communities.Today, Zimmerman said that if her office receives allegations of unethical research they can require the scientist’s institution to investigate and, if the ethical breach is serious, the institution and her department can take recourse against the researcher.Mosby’s paper was accepted by the journal Histoire Sociale/Social History and once it was published, he honed his social media skills, with cause. At 33—and as a new father—Mosby is nearly jobless. His post-doctoral fellowship at Guelph expires in November, and career prospects in the history of science are not good. Last year in Canada there were just three job openings in the field.Mosby’s paper came out on a Friday in mid-July. That morning he wrote on his blog: “I’m excited to see that my newest article, ‘Administering Colonial Science: Nutrition Research and Human Biomedical Experimentation in Aboriginal Communities and Residential Schools, 1942–1952,’ has just come out…”At 7 a.m. he tweeted the title and citation, tweeting again a few minutes later, “Surely the most emotionally draining research project I’ve ever worked on…” A fellow historian tweeted a link which got to Bob Weber, who covers the North for Canadian Press. As he read the abstract, Weber said when we talked recently, “I thought right away, ‘This is a good story, this has to be told.’”.He phoned a press officer at the University of Guelph but she had never heard of the article, so he tweeted Mosby, sending his number and requesting an interview. Mosby said afterward, “I suddenly realized that I needed to get ready.”Mosby sent Weber his article, but put off the interview for three days in order to reread his paper and its 85 footnotes, focusing on how to answer questions carefully “and not say anything stupid.” Later he tweeted that he was “inarticulate,” adding, “Kept telling myself, ‘keep it simple, don’t say too much.’ Instead, I just talked and talked. Hopefully turns out fine. Guy seemed nice.”

Nutrition experiments with native children: A nurse takes a blood sample from a boy at the Indian School in Port Alberni, Canada

Weber’s Canadian Press article came out on July 16th, the first day of the Assembly of First Nations’ annual meeting. The Chiefs issued an emergency resolution condemning the experiments, Mosby did 20 interviews in about 24 hours, the CBC covered the story intensively, and, the next week, Aboriginal groups held rallies in cities across the country calling for the government to honour the Prime Minister’s apology for the residential schools and release all documents about the nutrition research.The agency with the power to investigate Mosby’s findings is the Truth and Reconciliation Commission (TRC), set up to examine the horrors of the residential schools as part of the government’s $1.9 billion settlement of residential school lawsuits.A spokesperson for Aboriginal Affairs and Northern Development Canada told reporters that the agency had turned over 900 documents about the nutrition research to the Commission, and the Commission’s Senior Communications Advisor, Heather Frayne, later confirmed that the government provided those materials, prepared during the residential schools’ litigation, prior to Mosby’s article appearing. But the Commission was having trouble accessing additional archival materials—a longstanding problem.In 2012, the Truth and Reconciliation Commission took the dispute over archives to an Ontario court, and in January 2013 the court directed the government to “provide all relevant documents to the TRC…unlimited by where the documents are located within the government of Canada.” Even with the court ruling, the process has been moving slowly.Mosby’s findings may have had an effect. In early August, researchers for the Commission, funded by Aboriginal Affairs, entered Library and Archives Canada for a three-month stay, contacting Mosby for advice about how to identify documents related to the nutrition experiments. Yet some documents, it seems, are inaccessible.“The government is refusing to release the information from Indian Hospitals and TB Sanatoria,” Mosby said. “They say it’s private information and they see it as not connected to the residential schools' settlement even though children were often sent to these hospitals and sanatoria for years and years at a time.”It’s not clear who is responsible for sealing the hospital records. A spokesperson for the Office of the Privacy Commissioner of Canada, Scott Hutchinson, said in an e-mail that his office searched their database “and we were unable to find any record of having looked into issues of Aboriginal health records for individuals in residential schools.”Erica Meekes, a press secretary at Aboriginal Affairs and Northern Development Canada, said in an e-mail that a researcher would “have to contact Health Canada for health records” and Health Canada has not yet been able to reply to my questions.

Maureen Lux of Brock University in St. Catherine’s, Ontario offered an example of the sorts of evidence historians are missing. Investigating the history of Indian Health Service (IHS) hospitals for her next book, she discovered that in the 1960s, when the IHS hospital in Edmonton was scheduled for closure, local doctors lobbying to keep it open referred to its legacy as “the prime testing site” of streptomycin, an antibiotic used to treat tuberculosis in the 1940s and 50s.But Lux has not been able to find records of those tests, and she said she assumes they’re marked private. “I have no doubt that they’re in the National Health and Welfare archival documents,” she said. “As with most bureaucracies, they had phenomenal record-keeping.”In place of records, Lux is conducting interviews. She teaches in St. Catherine’s, Ontario but I caught her in Saskatoon, and two days later she would drive 400 kilometers south to a town of fewer than 700 people because a woman on the prairies had agreed to talk about her stay in an Indian Hospital.“When I get these opportunities it’s not like I can say, ‘Well, I’ll do it another time,’” she said. Every Aboriginal elder she’s spoken to has told her “they felt like they were being used as guinea pigs, that there were experiments.” But still, she hasn’t found records of the research.In September, Mosby met with Mi’kmaq elders who survived the school where the Vitamin C study took place. “One of the things that have happened almost every time I’ve talked to a survivor or an elder is suggestions of more experiments,” he said.Mosby has been following up on letters he’s received from residential school survivors since his article came out, including one in August from an anonymous writer who talked about communities where dentists may have been literally pulling teeth for research purposes.John Milloy, a professor at Trent University in Peterborough, Ontario, told me he saw suggestions of “dental experimentation” in files he examined for his 1999 book on the residential schools, A National Crime.

To Mosby, the bottom line is simple: “When Aboriginal people say that they were experimented on, we need to take that seriously and look into it.”As of late October, the Truth & Reconciliation Commission team at Library and Archives Canada has identified 4,000 health-related documents deemed worthy of digitizing, according to the Commission’s Heather Frayne.

But the government has yet to provide other relevant documents from the Archives and time is running out: the Commission is set to shut down in July 2014, though its chair recently said he may ask the court to extend its mandate due to the continued wait for materials.Susan Zimmerman with the federal Secretariat on Responsible Conduct of Research said her office is prepared to handle complaints of unethical research from the recent past. But, she said, ordering an investigation of research conducted decades ago is “utterly outside” her authority.

A nurse
takes a blood sample from a boy at the Indian School, Port Alberni, Canada

Yet for the historians, they just cannot walk away from the stories. Mosby, who said he is “applying for any job I can find,” has submitted a grant proposal to continue his digging via partnerships with Aboriginal communities, while Lux thinks the best route may be for her sources to request their own archival records—and she already sent one elder the request form. “Next time I see him I’ll ask him if he did it,” she said, “and if not, I’ll fill it in and do it for him.”

Miriam Shuchman is a physician-journalist and a CSWA board member. She was on a panel at Massey College, Physician Journalists: melding two professions.